This week we will meet Pam Jessen, she has a multitude of chronic condition including the condition we will highlight this week: Fibromyalgia.
Before we dive into the heavy stuff, please tell us all a little about yourself outside of your health! About your family or your hobbies !!
I am married to my incredible husband Ray, and we have one cat named Dorie. Our two kids Troy and Ashley have long flown the nest and we have three lovely grandsons (all Ashley's boys!). Ray and I live in beautiful Langford, BC on Vancouver Island in Canada. We are not far from Victoria so have the best of living in a smaller city with access to the "big" city so close. I blog at pamelajessen.com about Chronic Pain, Fibromyalgia and Invisible Illness and I also do a lot of volunteer work as a Patient Advocate, working with Healthcare Partners to make change in the way health care is delivered to people. In my spare time, I like to craft, read, write poetry, and get outside walking when I can (I use a cane and a walker for greater mobility).
Before we get into Pam’s interview let’s take just a second to look at Fibromyalgia.
Fibromyalgia is a condition that is very common these days. In fact it is so common that there are more that 3 million cases seen every year in the US. According to The American College Of Rheumatology Fibromyalgia is a neurological health issue that causes widespread pain and tenderness, and is most often seen in women. The pain and tenderness often comes and goes and may move around the body. Many who fibromyalgia also have extreme fatigue and may have trouble sleeping. This condition most often starts in middle adulthood, but can occur in teen years or in older age. Those who have any kind of rheumatic condition like osteoporosis, lupus or RA are at a higher risk for developing Fibromyalgia.
In order to diagnose Fibromyalgia there is no blood test or imaging study that can be done. Instead a physical exam will be required. To be diagnosed with Fibromyalgia a person must have a required number of tender points, must wake feeling unrefreshed, and report cognitive issues like foggyness! They must also report that the symptoms have lasted at least three months at a consistent level. And report a number of other general symptoms. Below you will see general symptoms of Fibromyalgia.
-Pain and tender points
-Concentration and memory problems, known as "fibro fog"
-Anxiety or depression
-Numbness, and tingling in hands, arms, feet, and legs
-Irritable bowel syndrome
-Problems with peeing
-Painful menstrual cramps
Now Let’s Jump Into The Interview.
Please share briefly what led you to the decision to become a blogger who focuses on chronic illness and also patient advocate if that applies to you.
My blogging initially started when I wanted to write about my Hip Replacement Surgery. I was not able to find many "first person" blogs or websites about younger people going through the surgery (I was 54), so I thought I'd write one. After that, I thought I could maybe share my story about living with Chronic Pain and it grew from there. The volunteering as a Patient Advocate was something I was eager to do, once my health stabalized to the point I could do something more active again. I knew I could not return to work, but this was something that would make a difference and fit into my schedule. I am involved with a group called Patient Voices Network in the Province of BC in Canada where I live and have been doing this type of work now for just over 5 years.
What Chronic Illness (en) have you been diagnosed with? Which one will you focus on today?
I have been diagnosed with Fibromyalgia, Osteoarthritis, Myofascial Pain, Trigeminal Neuralgia, Type 2 Diabetes (on insulin), Gastroparesis, Hypothyroidism, Reynaud's Disease and Bipolar Disorder. I will be focusing on Fibromyalgia for this questionnaire.
Diagnosing a Chronic Illness can sadly be a VERY long process! For you, how long did it take for an official diagnosis? And did you have to act your own advocate to get a doctor to take what was going on in your life seriously and look for a diagnosis?
I have probably had Fibromyalgia for over 30 years, starting in my teen years but it was not until 2005 that I was officially diagnosed. I had seen my GP about my ongoing chronic body pain, where my muscles felt like concrete and my brain was out of control, but the official diagnosis came from a Rheumatologist who did the 18 Tender Points test after a thorough examination and I had one of the worst cases of Fibro I had ever seen. Every part of my body was agony at that point - every point was inflammed beyond measure and my muscles ached and throbbed constantly. Combined with the Osteoarthritis I'd had since my mid-20's, I was a mess. In 1991, I was in a car accident that I thought started a big flare up of my symptoms. In 2004, I had stomach surgery for severe gastric reflux disease and there was nerve damage that occurred during the surgery, from where an instrument was left pressed against nerve during the entire surgery, unknown to the doctor. It took over a year for that heal, and really kicked my Fibro into overdrive. I was lucky though that a diagnosis came quickly and quite easily ... I presented the most textbook perfect Fibro patient you could imagine. My doctors put me on Cymbalta after a distasteful attempt with Lyrica (30lbs of weight gain in 3 months and constant dizziness and nausea) and it really helped. I was also taking Gabapentin for the nerve damage which made a huge difference in my treatment as well. I was not "well" at all, but my pain was much better managed.
Chronic illness is just that, chronic. Please share with us how your illness (s) impacts your daily life!
I never know what my days are going to be like. Everything changes, even within the day. I have Insomnia, so I'm always exhausted, which takes a toll on how much I can of each day. Pacing is critical for me, and if I know I have some type of engagement on a particular day, I have to be extra careful about how I manage my time. It helps that it's just the two of us and the cat at home, so maintenance is low and my hubby Ray does more than his share around here to help out. On days when I am volunteering, most of my work is committee meetings. Most of them are usually online and web based, but I do fly to Vancouver from Victoria at least once a month for a particular committee. I take the 6:30 am flight for a meeting that runs from 9-noon, then fly home on the 2pm return flight. Generally, by the time I get home in the taxi, I'm ready to nap right then and there, so that's what I do. I also try to make sure that I have built in the rest of the day and the day after a meeting, just to recuperate.
Sadly, being chronically ill can take a toll on all kinds of relationships. Have you noticed this in your life? If so how has your health impacted the relationships in your life?
I have been blessed to have my amazing husband who gets it as best as anyone who does not live it. Ray is my rock ... I truly do not know how I'd manage without him. I have pitches in with all sorts of things around the house, including cooking and cleaning, plus he's always done our laundry, so that's one task I do not have to worry about. He takes care of the heavier chores, I usually make dinner and do the dishes. We work well as a team, and he never makes me feel bad. I need to cancel something we've planned because my pain is too much. My kids are great too ... they check in with me frequently and when I am able to see them, it's easy to see how much they care. Troy lives in Calgary so I do not see him as often, but Ashley lives on the Lower Mainland and works in Vancouver, so when I'm there for meetings, I'm often able to meet up with her for lunch or dinner. I have a small network of wonderful friends who are extremely supportive of me. My online friends rock and I also belong to a couple of online support groups which make a huge difference in how I manage things day by day. I do not think I've gone through the experience of losing friends over my conditions, but I'm always such an outgoing positive person that I may not have even noticed.
Sadly, living with chronic illness can be live changing. Have you found that your life has changed significantly over the years of living with your condition? If so, in what ways has it changed?
The most important way my life changed was when I had to give up working. I was an Administrative Specialist focusing on the Operations side of Retail, and I am also a Certified Event Planner. I had been in my career for 15+ years and was at the top of my game when the pain and fatigue of Fibromyalgia became too much for my body to handle and I had to quit working. I went on Long Term Disability at work and then starting receiving my CPP - Canadian Disability funding from the Government. I was devastated when I stopped working - my career was everything to me at the time. It took several years and moved from Calgary to Victoria before I finally accepted the permanence of the situation. I fell into a depression in the early period right after leaving work and honestly did not think I would ever be able to contribute anything meaningful in any way again. It was not until I heard about the Patient Voices Network and started volunteering that I realized I had the ability to make a difference again and from life affirming work that allowed me to put my health first when needed. My relationship with Ray also changed. I went from feeling like an equal partner in terms of working and earning my own money, etc. to become dependent on him for so many things. I had to give up driving, so I became my taxi for a lot of my appointments. Medication made me dizzy and nauseous and that did not bode well for our romantic life. Sex went by the wayside far too often for both of us, but he never complained or made me feel like it was my fault. Fibromyalgia was the thief who took these things away from me, and there's no sense feeling guilty about something you can not control. I also ended up withdrawing from a lot of social networking and hanging out with friends as I just could not manage it physically anymore. After our move to Victoria and then to Langford, we only have a few friends who are physically in the same area, so I do not mind the quieter pace. My dearest friend in Calgary and I talk weekly and I go back to visit her twice a year, including in November for her birthday.
All diseases have different kinds of flare ups, and every one will exhibit different signs of flare ups. For you what signs do you know to watch when a flare is coming your way?
When my muscles start to feel like they're on fire, that's when I know how to flare up is coming. Normally, I just feel a deep aching throb, but that fiery feeling means that things are ramping up and I need to be prepared. The other way I get hit is with Chronic Fatigue. That's when I end up staying in bed for 2 days, doing nothing but sleeping (and still not feeling refreshed). It's harder to tell when I'll have to flare up that, because generally it happens in the way where I'll lay down what's meant to be a nap, and then I just can not get up again. I'm too exhausted, I'm actually beyond that point. It's called Quanked and I've blogged about it.
What do you do to treat your flares? Or to make your bad days better?
I use medication daily, plus for flares I use heat, muscle rubs with magnesium, meditation and music therapy and distraction techniques. I have done Cognitive Behavior Therapy which has given me some tools, and I have done some Pain Management programs at various clinics in Calgary and Victoria which have also provided me with ways to cope. One thing I always try to remember is that no matter how bad it gets, I've made it through all my flares in the past, so I'll get through this one as well.
Being diagnosed with a chronic illness can be very overwhelming. If you could give one piece of advice to someone who is going through the diagnosis process, or is newly diagnosed, what would it be?
There Is Always Hope !!!! That's the name of my blog and my motto for life. Do not give up ... do not give in. There are lots of things you can do to help yourself feel better, and if you can find the right support group, it makes all the difference in the world. Being with people who "get it" is critical.
Living with a chronic condition is hard, it's just! Especially because for the most part there are no outward symptoms that can be seen by others. If you could share one thing with the public about living with a chronic illness what would you want them to know?
Just because I look fine on the outside does not mean I'm fine on the inside. Also, respect my choices for my treatment plan and do not harrass me about "have you tried this, have you tried that". Trust me, I always look to see what's new and available and between my doctor and I, we're doing everything we can to give me the best outcome possible.
Where You Can Follow Pam
For More Information on Fibromyalgia: